Uncover Beliefs About Patient-Generated Health Data
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1 Uncover Beliefs About Patient-Generated Health Data Session #45, February 20, 2017 Christina L. Hoffman, MS, VP, Strategy & Quality, Medscape/WebMD Jamie DeMaria, PhD, MBA, Senior VP, Education, Medscape/WebMD 1
2 Speaker Introduction Christina L. Hoffman, MS Vice President, Strategy & Quality Medscape/WebMD Jamie DeMaria, PhD Senior Vice President, Education Medscape/WebMD 2
3 Conflict of Interest Christina L. Hoffman, MS Is a salaried employee of WebMD Jamie DeMaria, PhD, MBA Is a salaried employee of WebMD 3
4 Agenda What is PGHD? Why it matters Survey Results Conclusions Implications and recommendations 4
5 Learning Objectives Compare and contrast physician and patient perceptions of the value of PGHD/PRO Identify physician barriers and success factors to use of PGHD/PRO Identify patient barriers and success factors to collecting and reporting outcomes to their physician PGHD=Patient Generated Health Data PRO=Patient Reported Outcomes 5
6 An Introduction of How Benefits Were Realized for the Value of Health IT Patient Provider Data reporting Enhanced communication Data sharing Patient education/engagement 6
7 Patient Generated Health Information/Data Health-related data created, recorded, gathered, or inferred by or from patients or their designees (i.e., care partners or those who assist them) to help address a health concern Medical/family health history, symptoms, medication lists/side-effects, biometric data, lifestyle choices, outcomes Not a new phenomena, however technology can offer solutions for effectively collecting, sharing and using data Office of the National Coordinator for Health Information Technology, April Fig 1: Types of PGHD HIMSS 2014
8 Why do PGHD/PROs Matter? Within 5 years, the majority of clinically relevant data will be collected outside of the clinical setting (Gregory Abowd, AMIA keynote, 2011) what happens BETWEEN visits Exemplifies patient empowerment/engagement and supports shared decision making essential for patient-centered care! Improves provider-patient communication Helps providers make recommendations based on a patients expressed needs, values, preferences and goals what matters most to patients! Improves the patient s skills, knowledge and confidence in selfmanagement Has the ability to improve safety, quality, care coordination and reduce cost Under MACRA, outcomes measures, including PROs, are considered among the most important measurements Practical ways to include PGHD/PRO in clinical decision making are needed, NOW! 8
9 Challenges to Use of PGHD CLINICAL PERSPECTIVE Information overload Efficiency & clarity of data Liabilities Non-standardized devices and software protocols that have not been vetted by the clinical community Data provenance issues Efficiency of workflows Financial impact Reconciliation clinical staffing training and support INTEGRATION INTO CLINICAL PROCESS/WORKFLOW Training and support Trust of data source Interoperability of data in disparate systems and technologies Compilation and presentation of patient data Technology standards for PGHD consumption Meaningful trend analysis PATIENT PERSPECTIVE HIMSS 2014 Trust of data reviewer Privacy and security of patient information Device reliability, calibration and accuracy of software to retain and distribute results PGHD app accuracy, reliability and performance Patient input into the use and management of personal data Disclosure or use of PGHD to unintended third parties Secondary uses of data 9
10 Survey Results 10
11 Patient Generated Health Data Surveys HEALTHCARE PROVIDERS CONSUMERS/PATIENTS Medscape Education (members) Physicians, NPs, Nurses, PAs >20 patients/month October 10 to November 27, 2016 n=1211 No remuneration provided WebMD.com (visitors) US resident >18 years of age Seen provider in last 12 months October 10 to November 27, 2016 n=1762 No remuneration provided 11
12 PGHD Defined in Our Survey Logs, diaries or lists of health-related information, measured, recorded or gathered by the patient, or by their family members or care givers. The gathering of health data could be done manually (written down) or by an electronic device (for example, a fitness tracker or Smartphone APP). 12
13 Survey Results Demographics 13
14 OFFICE BASED n=92 DEMOGRAPHICS Office-Based Healthcare Provider Demographics Total Area of Practice Gender Employment Status Physician Nurse Practitioner Physicians Assistant Primary Care (FM and Pediatrics) Specialist Female Employed 27% 7% 23% 66% 77% 77% 84% 14 Office-based n=92
15 OFFICE BASED n=92 DEMOGRAPHICS Office-based Healthcare Provider Demographics Years in practice Solo vs group practice < Solo 2-7 providers 8 providers Other 36% 10% 54% 14% 31% 42% 13% 15 Office-based n=92
16 % DEMOGRAPHICS (N=694*/1762) Consumer Demographics Age Gender Highest level of education < Female Less than high school High school graduate Some college Graduated college (associate s degree) Graduated college (bachelor s degree) Postgraduate degree 14% 26% 23% <1% 9% 22% 11% 30% 28% 40% 37% 60% 61% 16
17 % DEMOGRAPHICS (N=694*/1762) Consumer Demographics Provider s practice settings Officebased Community Hospital/ Non-academic Medical Center University Hospital/ Academic Medical Center Government Other 73% 9% 7% 3% 8% 17
18 Survey Results Findings 18
19 Less Than 40% of Consumers Have Ever Provided PGHD to their HCP 19
20 Patients Provide PGHD Without Being Asked to Do So About how often do you provide PGHD to your HCP without him or her having asked you to do so? (n=696) Responders who provide PGHD CONSUMERS/PATIENTS 5% 15% 30% 23% 27% All or nearly all the time Often Occasionally Rarely Never Providers Agree 20
21 Patients Usually Provide PGHD When Asked, But When They Don t They Just Forget Has there ever been a time or times when you have not provided your PGHD to your HCP even though your provider had requested that you do so? (Select all that apply) (n=1763) Yes, why not? (n=126) I forgot 48% Yes 7% I thought providing my PGHD was optional, a nice-tohave for my HCP, but not essential. Other 18% 17% No 81% I didn't have the time to collect the requested PGHD. It was too difficult to collect the requested PGHD. 15% 12% Don't recall 12% I didn't see any benefit to making my PGHD available. I didn't think my HCP would actually use my PGHD. 10% 10% 21
22 Patients: PGHD Frequently Discussed When They Bring It How often would you say the PGHD you took to your medical appointment/ discussion with your HCP was actually used or discussed with your provider during that appointment or discussion? (n=696, patients who provide PGHD) CONSUMERS/PATIENTS 2% 6% 18% 46% Always Frequently Sometimes 28% Rarely Never 22
23 PGHD Use Results in Higher Engagement during Clinical Encounter In situations where you have used PGHD during office visits, how engaged do you feel patients have been during that visit, compared to visits in which PGHD has NOT been used? (n=92) On average, how engaged do you feel your HCP has been with you during the appointments where you provided PGHD compared to appointments when you have not brought any PGHD? (n=694) OFFICE-BASED PROVIDERS 3% 2% 30% 25% My patients are much more engaged when I do use PGHD during office visits My patients are somewhat more engaged My patients are engaged at about the same level, whether I use PGHD, or not PATIENTS 1% 2% 31% 31% A lot more engaged when I provide my PGHD during office visits. Somewhat more engaged Engaged at about the same level Somewhat less engaged 40% My patients are somewhat less engaged 35% Much less engaged My patients are much less engaged 23
24 Providers Believe Patients are only Moderately Motivated to Provide PGHD How motivated do you find your patients are, on average, about providing their own self-generated health data to you? (1=not at all motivated; 5=highly motivated) ALL PROVIDERS, Not Office-based n=414 MEAN=2.95 OFFICE-BASED n=92 MEAN=3.17 p=
25 Biggest Motivating Factor to Provision PGHD: Provider & Patients Agree Understand How Data Will Be Used in Care How much do you agree with the following statement: The single biggest factor that makes patients motivated to provide PGHD is a clear understanding of how that data will be used in their care. (n=92) How much do you agree with the following statement: The single biggest factor that makes me motivated to provide PGHD is a clear understanding of how that data will be used in my care. (n=695) OFFICE-BASED PROVIDERS CONSUMERS/PATIENTS 4% 1% 5% Agree strongly 3% 6% Agree strongly Agree somewhat Agree somewhat 50% 40% Disagree Somewhat Disagree strongly Don't know/no opinion 30% 61% Disagree Somewhat Disagree strongly Don't know/no opinion 25
26 Patients Say: More Likely to Provide PGHD When Used to Develop Their Care Plan I am more likely to measure, collect and provide PGHD to my provider if I feel it will be used to develop my treatment plan or care. (n=466) CONSUMERS/PATIENTS 1% 1% 1% 15% Agree strongly Agree somewhat Disagree Somewhat Patients who are undergoing treatment 82% Disagree strongly Don't know/no opinion 26
27 Most PGHD is Still Handwritten Diaries, lists or logs List of symptoms they had Lists of medication or treatment SEs Questionnaires or scales Health data measured by trackers/apps List of improvements seen in their condition List of triggers Other What types of PGHD do your patients provide? (Select all that apply) HEALTHCARE PROVIDERS OFFICE-BASE (%) n= What types of PGHD do you take with you to your medical appointments or otherwise make available to your HCP? CONSUMERS/PATIENTS (%) n=
28 Electronic Transmission on PGHD Two Tales Do you provide patients the opportunity to send PGHD to you electronically? ( , texts, online via a portal, automatic cloud storage, etc. (n=92) OFFICE-BASED PROVIDERS Does your HCP make it possible for you to send your PGHD to him or her electronically (n=851) CONSUMERS/PATIENTS Yes Yes 41% No 28% 43% No Don't know 59% 29% 28
29 How is Electronic PGHD Shared? In what way(s) is your PGHD made available electronically to your HCP? Please select all that apply. (n=146) CONSUMERS/PATIENTS I bring my PGHD to my appointment on an electronic device. 21% I my PGHD to my HCP. 47% I go to my provider's website and enter/upload the relevant PGHD. 42% It automatically goes from my computer or mobile device to the cloud, where my PGHD is stored for my HCP to access it. It automatically goes from my smart phone or tablet directly to my provider for immediate access. 11% 13% 29
30 Office-based Providers Consider PGHD Trustworthy, Accurate & Complete COMPLETENESS Mean=3.36 TRUSTWORTHY Mean=3.91 ACCURACY Mean=3.74 Patients Say: Providing PGHD is Easy, Important & Complete Mean=4.16 EASY IMPORTANT Patients say statistically more complete than providers Mean=4.53 Mean=4.45 (1=not at all; 5=highly) p=
31 MOST IMPORTANT LEAST IMPORTANT Provider s Attitudes Regarding PGHD How much do you agree or disagree with the following statements: (5=STRONGLY AGREE, 1=SOMEWHAT DISAGREE) (n=386) NOT Average weight Patients would be more likely to provide PGHD if they knew that the provider reviewed the information. Patients would be more likely to provide requested PGHD if it were easier for them to do so. The benefits of having PGHD far outweigh any of the disadvantages. Patients would be more likely to provide PGHD if the provider used the information in the development of the patient s treatment plan. Average weight PGHD helps to risk stratify patients. New digital tools have done a lot to increase the quantity of PGHD. Discussing PGHD increases the length of the office visit/discussion. New digital tools have done a lot to increase the quality of PGHD. Patient s don t understand the relevance of the health data they collect. Average weight Data security (privacy) of PGHD is a concern. Most of my patients don't want to provide PGHD. Not enough PGHD is clinically relevant in the sense of being beneficial to patients' care. Most PGHD is not reliable data. PGHD adds to the alreadyexisting problem of too much patient data/information. p= p<0.0001
32 Number of Portals Providers Reference On average, how many different electronic health portals do you have to access in order to manage your patient panel? (i.e., EHR, Lab, Radiology, etc.) (n=119) OFFICE-BASED PROVIDERS 5% 7% 4% 13% 22% 28% 21% >5 Don't know 32
33 Providers Believe Biggest Barriers to Patients Providing PGHD: COMPLEXITY of Technology & TIME What do you think are the biggest impediments to patients providing PGHD electronically? (Select up to three) (n=119) CONSUMERS/PATIENTS Patient portals are too difficult to use. It's simply too overwhelming for sick patients to do this task themselves, and not everyone has a caregiver. Patients don't want to have to remember to do record-keeping. Generating PGHD is too time-consuming for patients. 33% 31% 30% 30% 33
34 Survey Results PGHD Barriers/Facilitators 34
35 Barriers PGHD: Patient Perceptions Forget to collect/ share PE Thought providing PGHD was optional Too difficult to collect edata TIME: Didn t have the time to collect it USE: Didn t think the provider would actually use; Didn t see the benefit TIME: Office visits too short SAT 35
36 Barriers PGHD: Provider Perceptions Don t always review data or use it to develop the treatment plan Lack of relevance, organization and record integration Not enough TIME to consider the data Patients don't want to have to remember to do recordkeeping Patients do not believe that PGHD makes a difference in their treatment Patient portals too difficult to use 36
37 Facilitators PGHD: Providers Providers need to ask for PGHD information Sat Providers need to explain why PGHD is important and how it will be used in care PE HCPs must listen and use the information provided by the patient Make data collection easy (standardized, digital) to insure data relevance, organization, reliability and accuracy Better technology solutions for data integration into the EHR are needed edata More time 37
38 Survey Results Conclusions 38
39 Provider Conclusions Vicious Cycle: Providers don t think motivated to gather/ provide PGHD Providers tend not to ask patients to provide PGHD, so they generally don t Trust PGHD: PGHD is largely accurate, complete and trustworthy Useful but time consuming: When PGHD used in a clinical encounter, Patient Engagement increased, as well as time it takes to complete the encounter Handwritten PGHD typically provided in form which is not ideal for recording/ documenting Net/Net The benefits of PGHD outweigh the disadvantages 39
40 Patient Conclusions Patients don t provide PGHD when they are not asked to do so Patients are motivated to collect/share PGHD if they understand why its important and how it will be used Collecting PGHD is easy and important Patients largely collect PGHD in handwritten, non-digital form Net/Net Patients engage more when their PGHD is discussed 40
41 An Introduction of How Benefits Were Realized for the Value of Health IT Patient Provider Data reporting Enhanced communication Data sharing Patient education/engagement 41
42 Questions? Christina L. Hoffman, MS Vice President, Strategy & Quality Jamie DeMaria, PhD, MBA Senior Vice President, Education 42
43 Thank you! Remember to Complete Your Evaluation 43
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